The fascinating case of Henrietta Lacks.

[Brigid]

60 years ago, an African-American woman's cells were harvested without consent and used for cancer research. Descendants of these cells are still being used today. Sadly, the family has never has received any share in the profits from all this.

http://www.thedailybeast.com/newsweek/2010/02/15/health-care-injustice.html

http://henriettalacksfoundation.org/

[Kali]

1. Amy Goodman did a story on this on Democracy Now! a while back,

[woodsprite]

2. That was the required freshman reader for my daughter

this year. She's going into college. I read it as well. Very interesting
book. Some of the Lacks family and the author are going to give a
talk at the Univ of DE.

[woodsprite]

3. The book said over 60,000 research papers have been generated

Worldwide from research using her cells. They continue to generate
approx 300 each month.

[FloridaJudy]

4. I'm rather torn about this

While harvesting cells from a patient, and then using them for research without explicit consent is certainly unethical, this is one of those situations where it would be highly unlikely for the patient to be harmed. Taking a biopsy from a suspected cancer before starting treatment has always been SOP, even if passing them on to a researcher when finished is not. While the research didn't harm Ms. Lacks, she never benefited from it, alas! Neither did the hospital nor the researchers: they mailed off the HeLa cells to any scientist or facility who requested them, without charge. It was in the grand tradition of scientific cooperation, which has become a bit tattered of late.

But once people started profiting from selling the cells - or from the research they made possible - a line was crossed. Her family deserved some compensation, and a tidy percentage of the profits would only have been fair.

Sadly, it still goes on today. Been in a hospital lately? I'll bet among the forms you signed was something to the effect of "We get to do whatever we want with any specimens we take" written in convoluted legalese. And patients have been exploited when their blood, or DNA, or whatever, proved to contain something useful. Legal? Yeah. Ethical? No way!

But if Johns Hopkins hadn't collected those specimens, who knows how much longer the research that has benefited millions would have taken?